WHY AM I DOING THIS? Five words buzzing like bees through the interior of my mind…between inside talker, Ray Valenz, uttering “FREAK” and “KING!” over the double speaker amplification system. All broadcast to the 300 person occupancy bleacher seating of the Brooklyn auditorium. And then…there are seconds left, preparing my leap back upon the Coney […]

The Social Security Administration in Austin does not serve the people who reside here. I ask you to try calling either (866) 627-6991 or 512-206-3700. And see where that gets you. If you call the national hotline you will get someone who will redirect you back to your local administration. This is not serving anyone in need. People […]

My hands and feet are odd. Both effected by Ectrodactyly. But my body is different as well. From my straw like hair, burning eyes with dark circles beneath, blotchy skin, small ears, delayed hearing, see through teeth, sweat glands, underdeveloped chest, and nails that either split or curve growing back into my skin. Medical issues […]

Studying the effects of Ectodermal Dysplasia. Join along the journey. Texas is terrible place for folks living with rare diseases. Suppression of information is pathetic. Doctors for profit in the pocket of big pharmacy. Dentist are thieves. Insurance is a joke. https://rarediseases.org/rare-diseases/tooth-and-nail-syndrome http://gofundme.com/ectrodactyly

Ectrodactlyly or EEC Syndrome has taken a physically toll upon my health. EEC not only affects hands and feet but also hair, teeth, nails, skin, hearing and sweat glands. Embarrassing as it is to admit publicly on social media the effects on my teeth have been the most devastating. I’ve lost all four of […]

What does the word FREAK mean to the King of Freakshow, the Black Scorpion? I’ve been asked to personally define the meaning of this particular word in question on street corners, inside crowded subway cars, operating rooms, sewers, theatres, bank standoffs, by taxi cabs drivers, mechanical engineers, aeroplanes pilots, documentary presenters, with my back against […]

…is this what the start looks like or a continuation just one blooming closer to home are we all finishing what two allegedly unknown hands began or is this the end when the vacuum bag burst free and we realize world war three #buildnewlegends

Ectrodactyly, you say? Or did I say Ectrodactyly? I am not sure. Though I’ve certainly spelled these exact letters in this precise sequence: E-C-T-R-O-D-A-C-T-Y-L-Y over three hundred and thirty three thousand times on stages across the United States of America though not once ever on foreign soil in these modern times. What is this Ectrodactyly you ask? Or did […]